This Is MS Multiple Sclerosis Community: Knowledge & Support

I had a heart test that involved radioactive dye and used the average of large numbers of images to better define ejection fraction. MRI uses only one image per slice. I wonder if averaging over multiple images of the same slice would be able to reduce the effects of movement. You might not be able to use dye the same way as the heart scan used radio-dye, but there might be some way to do this...

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Medical ethics in practice.
Yesterday I had a long meeting with the medical director of the Chirugical Clinic in Medicover Hospital in Warsaw, Poland (Doz. Maciej Kielar) about the
ethic component of healing medicine. Doz. Kielar is strongly of the opinion, that any patient deserves the right to be diagnosed exactly and to receive also an exact assessment of his/her situation after the diagnose.

This means also that the patient may receive a denial of CCSVI treatment if the diagnosic picture is such that the treatment is not helpful or too risky. The patient - according to Doz. Kielar - accepts this verdict knowing finally what the clinical status of the own condition really is and why the treatment is denied.

I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
Regards
Rici

I fully agree, Rici. A month ago I had an appointment with one doctor for CCSVI operation, but I got flu and I cancelled it. Before doing so, I called the doctor and asked him about it, but I was told that I can go for the operation, no problem if I have flu, high temperature, sneezing, coughing. In my country doctors had a different opinion, if it is not an emergency operation, I was told operation with such condition that involves even long, tiring flight should be cancelled. ...You probably know what is the real cost of such operation in Poland, so you can easily do the math.

i agree, ivus seems to be the best way to image the azygous. and probably the jugulars as well. still, i am occasionally disappointed with how hard it can be to see the valve leaflets on ivus when they are easy to see on conventional us.

btw, not faulting you suggestion. we are all learning with every procedure we do. and there is still much to be learned.

The Medicover in addition a few thousand even cheaper than in Euromedic.
Regards
Rici

Rici I am so glad you managed to find a hospital where we are treated with respect and dignity. It is nice to know you are in a place where money is not more important than your well being.

I thought that Zamboni found an affected Azygos in 86% of the patients in the original study? Is this not true? Did Simka find a low number?

Couldn't the location , degree of stenosis, degree of reflux, percent and extent of cerebral hypoxia, degree of turbulence (sheer stress interruption), Degree of cerebral hypoglycemia all contribute to the specific signs & symptoms exhibited by MS /CCSVI PATIENTS.

My daughter had an almost completely blocked Azygos and a partially blocked Left IJV. this would force the brain venous outlet flow to flood the Right IJV. I find this is very significant as less than 1 month prior to her venoplasty she had profound right facial weakness. Could edema or pressure on her right facial nerve have led to her facial paralysis? I wonder?

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Mike, two more valvular stenoses of the azygous picked up with IVUS with normal venograms this weekend

Expiration was Zamboni's idea. He was thinking that end expiration would maximize the thoracic pump and get optimum flow. I think that is correct.

however i do the jugulars in end expiration but the azygous in inspiration. The reason is that I find that there is more motion on end expiration in the chest, the images are poorly registered and i get a better picture in inspiration.

i too have a low incidence of abnormal azygous veins, but as i get better with IVUS I am finding more subtle valve stenoses in the craziest places in the azygous. In 3 or 9 patients treated this last week, ivus showed a valvular stenosis that was not seen by venography.

Rici
i understand from many of your posts that you are very dissatisfied with your treatment at other clinics. However i think your statements about "earning machines" is slanderous and unfounded. I have worked with people you are upset with and i am not of the opinion that they are only doing this for money or that they are not trying to get quality.

we should be respectful of trailblazers. unfortunately sometimes their ideas are incorrect but they show courage to act while others sit back, come into the situation llater and then criticize.

i also have treated hypoplasias in the hope of successful treatment, only to fail. given no one coming forward with another idea, my patients and I chose to try.

I think you should lighten up and slow down. We look forward to presentation of data from drkielar

DrS

I have no issue with professionals being well paid and I suspect many others would think the same. I was the third cab off the rank in Katowice after Rici and Erika. I didn't see that Drs Ludyga and Simka were treating only for money. Dr Simka is committed to CCSVI.

But emotionally I feel a little like Rici. There are not only pioneering doctors - there are also pioneering patients, and I think some of us feel that we have been left a bit high and dry by people we have put our faith in.

MS is a lonely enough gig at the best of times, but when we are not getting the assistance we believe we should, it can be a battle and a half. Additionally, our treatments stretching back a year and a half, should be cases of considerable interest to the professionals, but sadly this does not seem the case.

So I think it could be just a little inappropriate to say that someone like Rici, after all he's been through, should lighten up. Having said that, I certainly respect all you are doing Dr S, to propel CCSVI forward. Where would we be without you? The treatments you and your colleagues are providing now, are a long way from where things were a year and a half ago.

perhaps i was too harsh

i have been accused too of being in this for the money. that i charge more than others. that i left the university to make the big bucks.

it hurts on this side too

As patients I think we go into this knowing it is a new use of an old procedure, all the details have not yet been ironed out. The feeling of being left high-and-dry may be because there is nothing more the doctor can do?

The extra costs of IVUS (both in hardware and time added on to the procedure) are part of the cost at the Brooklyn AAC. I've been excited about IVUS since around this time last year! As for Dr. Sclafani leaving the university to make the big bucks, I have been under the impression that it is the other way around, that he made a sacrifice in order to take part in this discovery.

For the sacrifices and the trail-blazing, thank you.

Agreed! And thank you for hurting for us... as we also hurt for Rici

Without labouring the point, I think it was Rici who organised the 2009 documentary concerning his treatment which helped put Katowice on the map regarding CCSVI and led to many people heading there before treatments were available elsewhere.